Thursday, December 25, 2008

'An ever-fixed mark'

On and off today, I've been meditating on the balance between disability and illness that many families with disabled children face.  From the outside looking in, many people see disability itself as a fixed point on a spectrum of abilities: whatever it is that your child cannot do, where your child appears to be on a sliding scale of relative achievement and ability that many parents use to adjust their perception of their own children.  But, of course, childhood disability is not a fixed point--even Christopher Reeves gave the lie to the idea that paralysis is a fixed point or a juncture at which a human being is forever stuck, like a butterfly on a pin in a display case.  

Like Stanley Fish and this idea of "kinetic art," the human body and mind, even in resting pose, are hardly static.  The body and mind as a work of art, responding and shaping themselves against the environment, experience, and genetic possibility, is a concept that resonates with me.

Of course, Robert's disabilities are endlessly "kinetic," must always be "read" in context, and are constantly shifting, as though Jacques Derrida had produced a piece of living performance art: my child as a text embodied, perpetually deconstructing and reassembling itself.  Do not ask me this evening to explain exactly what I mean by this--you'd have to be around Robert for a long period to really grasp this.  Let me just say that I'm weary of people who need, or worse yet, require him to be a fixed point.  That is to say, most educators.  Teaching to a child whose mind and body are constantly in a state of dynamic flux is certainly difficult, but I find that so many of these people have a built-in resistance to the very concept of my son.

At my wedding, I had my brother read Shakepeare's sonnet 116.  Ah, the irony.  "Love is not love / Which alters when it alteration finds, / Or bends with the remover to remove."  It gets worse: "O no, it is an ever-fixed mark / That looks on tempests and is never shaken; / It is the star to every wand'ring bark, / Whose worth's unknown, although his height be taken."  

As a mother, I am caught in the cross-fire of love that must not alter or risk losing the appellation and a child in flux.  Don't get me wrong: all children grow and change, all children are in flux.  And yet there is an expectations gap between the normative and the disabled.  My child's change and flux is 'incorrect.'  A child grows from 'an ever-fixed mark' and upward into adulthood.  But not my child.  There is no fixed mark from which he sallies forth.  Thus, like the geometric proofs I so despised in high school, lacking logic in his very metrics, he either defeats Pythagorus or Pythagorus emerges victorious from the intellectual coliseum.  

But I was talking about the balance between disability and illness.  We feel constantly defeated in so many ways by Robert's disabilities because of this mythic disabled child we hear so much about from those who monitor such things: doctors, therapists, educators.  This child who rises from a fixed point of disability and grows from that place.  The child whose disabilities are 'stabilized.'  Does that kid exist?  

If disability is a point that has a potentially fixed mark, a sort of constancy against which change and achievement can be measured (like the bunny growth chart hanging on our wall in the upstairs hall), then illness is its counterweight.  Illness, if it is indeed separate from disability, is that, which like the concepts that undermine love--jealousy, for example--becomes the variable that no one can contain.  In our experience, disability and illness go hand-in-hand, the constant married to the inconstant, the marriage of heaven and hell as it were.  The thing that people without disabled kids cannot understand: is he disabled, or is he ill?  The false dichotomy.  

Or as Shakespeare ends his sonnet: "If this be error and upon me proved, / I never writ, nor no man ever loved."  Or, Pythagorus be damned.  

No comments: